Welcome to my X, Y or Z Village

Over the last few years, the concept of Dementia Villages, Memory Cafes, Dementia specific shopping lanes, etc. has been growing, and worse, the villages are currently being lauded as ‘best practice’, in spite of there being NO evidence for them. Just like the Dementia Friendly Community or Dementia Friends initiatives, they were developed by people without dementia, with no consideration of human rights, disability rights, segregation or inclusion in their development.

I’m not saying they have not been positive, in terms of raising awareness, and the village concept may be better than the small locked dementia units, but what I feel we need to do, is more seriously question if they are the right way forward. I also wonder, is it actually kind, or helpful to segregate and label us in this way?

I posted a comment on LinkedIn recently, which started with “Another ‘sugar coated ghetto’ being built to continue to segregate people with dementia…” It caused a lot of interesting discussion, and Catia Malaquias, the recent winner of the AFR Women of Influence 2018 Diversity & Inclusion category, and winner of the Australian Human Rights Award 2018, who is also a Lawyer, Founder and Director commented with “I wrote this a little while back, yes enough sugar coating of segregation: “Some cages have sugar coating“.

We must all start to view everything we do through the lens of human rights, which therefore also means through the lens of the CRPD.

As I am often the Devil’s Advocate, let’s see how well we would react to the following… Replace the signs on the shopping centre image below, then imagine each shop as a ‘village’.

Please ask yourself, how you would feel about this type of segregation and the labelling of our conditions? Oh, and where would we live, if we had co morbidities, as most people from the age of 65 already live with three?

Surely we must ask ourselves, are the Dementia Villages, or Dementia specific Cafes and Shopping Lanes really a fabulous idea, or are they just another form of keeping the myths alive and ensuring continued sense of ‘otherness’, as well as being an expensive new form of segregation? We must also ask ourselves if these initiatives might also be increasing the stigma and discrimination, or at least keeping them alive?

Let’s replace the signs on each shop in the image with:

•Dementia

•Cancer

•Mental Illness

•AIDS

•LGBTIQA

•Indigenous communities

•Diabetes

•Heart Disease

•Leprosy

•Motor Neurone Disease

•Multiple Sclerosis

•Autism

•ADHD

All I am asking is we reconsider the possible negative human rights breaches of these initiatives, especially as there is little or no evidence for them.

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25 thoughts on “Welcome to my X, Y or Z Village”

Hi Kate,
Thank you sooo much for naming this issue. I have been concerned that there has been largely blind acceptance of dementia villages as the way forward. It is highly likely they are better than locked units, but they are still based on not just a segregated model and therefore afford people little access to typical roles and activities, but a congregated model as well with little access to typical ordinary citizens to help people stay oriented to the real world. One of your contributors wondered about those people with very high dependencies – a fair query – my sense is that if our highest order goal is to keep people connected to their own familiar people, places and past-times (i.e. their own identity) then the answer lies in better (more supportive, more strategic, more effective) community services.
A further concern that I have with the dementia village model is that it doesn’t appear to be based on a decent evidence base – and if I am wrong about this, then please correct me! I visited the dementia village De Hogweyk in 2017 and asked a founding manager about any research that had been done into the model and he said there wasn’t any. Thank you again for fearless naming,
warm wishes,
Jane

Dear Jane, thanks for your contribution to this conversation, which I do believe is an important one which no one has been willing to debate sensible on until quite recently. As far as I know, there is no evidence based research to support them, nor is there any EBR (that I would see as truly valid, and unbiased) for secure units, or for BPSD – or for the DFC or Dementia Friends initiatives. Society (IMO) has too quickly embraced so many concepts and models of care or assisted living, without evidence, then academics and others have spent inordinate amounts of money doing reseach to justify them. The quick fixes have almost all been a breach of our basic human rights if we are truly honest about them. So, let’s keep questioning, and debating these things, openly. Perhaps then, we will create real change? Happy New year to you as well, I hope it is wonderful for you. Take care, Kate

And happy new year to you, your husband (so good to meet him late last year) and family.

Here’s a thought. Perhaps 2019 will be a year when we might see a gathering of interested people with a spirit of critical inquiry about the models that have recently been developed, without the usual rah-rah of ‘we are the best’?? Perhaps the critical lenses could be multiple, like ethics, effectiveness, unintended consequences, not sure what else? Could even be good to try and clarify the real needs (in order to thrive) of people living with dementia and dependencies. Could be a good contribution to coincide with the Royal Commission?

Hi there Kate, yes 🙂 What do u think is a good first step? Perhaps a phone/Skype conversation? I am on leave til the end of the month, but very happy (truly) to have a chat in the next couple of weeks before stuff gets too busy. Happy to be guided by you. Warm wishes Janehttp://www.sherwinconsulting.com.au

Hi Jane, I’d love to have a chat next week. I’ve removed your phone number from your online comment for your privacy, but saved it and will send you a text with a couple of possible times. Take care, Kate

Until people without disability are prepared to give their time to help those with disability nothing will change. This means real change for those who do not have a disability: it means including all in life. It means accepting that no one has a disability. A child born with a disability does not know they have a disability until Society tells them they have a disability. Unfortunately, most people in today’s world are not prepared to pay a small price…in time and money…to give everyone a great life. Keep up the good work.

Having a foggy day so not too good at comments, but do remember a Q and A at a company I used to work for where boss said villages were a good idea, hundreds there, I was only one to query this and she said it had been said to get people to think as she disagreed with it too! I was always the awkward squad at work… Villages separate people from the community and only available to wealthy folk…enough said.

Hi Kate completely agree segregation is not the answer, inclusion is what we need to strive for. I saw so many connections with young and those living with dementia the article ‘some cages are sugar coated’ loved the quote in it “caged birds are accepting of each other but flight is what they long for.” Maybe it’s the rest of us that also need to be more accepting after all a dementia diagnosis is not a choice anyone I know consciously makes 🤔
X ness

Love this Ness… ‘“caged birds are accepting of each other but flight is what they long for.” Maybe it’s the rest of us that also need to be more accepting after all a dementia diagnosis is not a choice anyone I know consciously makes.’ xx

Hi Kate, thanks for your response. I work in aged care and am studying dementia so I am very, very interested in your opinion because as you rightly say we never hear from the people who actually have dementia. I will look into Group Homes Australia because I do agree with you, but have no idea what else is on offer.

Hi Kate, As always I am very interested in what you have to say and I totally see your point. My question is, what happens when the person with dementia progresses in their disease and becomes incontinent or violent or any number of things? The people they currently live with cannot care for them for one reason or another, then what happens? (As I said I agree with you and I am not looking to argue, I am genuinely looking for alternatives.)

Hi Debbie, I don’t actually mind if you disagree or argue with me. I’m hopeful of sensible conversations, and am always up for changing my mind. I’m well aware, having had to find nursing homes for 3 people in the last few years, it is not something we can remove completely. But we need to start operating everything we do from a rights perspective IMCO. From what I’ve seen, Group Homes Australia have nailed assisted living. I could live there today.

Simple answer: if a family is around they need to talk to and plan for the future with the person who has dementia, in my case my mother was able to tell me 10 years before she wanted me to care for her until the end of her life. My mother is the centre of my family. I do everything for her. If no family is available then society needs to spend the money and provide individual answers. This means talking to people with early onset and planning for their future. Here in the UK some local authorities actually ask care providers to bid to take on the care at the lowest possible price. It means spending a lot more money and it means all of society deciding the care of all is more important than saving money. It means teaching children at school about dementia so they learn there is a better way to live a full life.

Hi Kate , thanks for this thought provoking article. I too have thought that people with dementia are being segregated but you have put this far more articulately than I ever could. Kind regards Denise

Thanks Denise, it is a tough topic, as investors have been spending millions on these villages, and the media and others have talked them up too. It is definitely a conversation that is needed, as noone had it when we fist started building secure demetnia units! And we know the abuse that happens in them and many institutions for those in aged care with or without dementia. It seems, humans do not easily learn from the mistakes from history or even our own past mistakes.